posted
I've only been treating my Lyme for three months - but I've reached a point where I feel that it's the abx now which are making me sick - GI (nausea, diarrhea).
I have taken ~30 pills a day - 6 different abx, 3 probiotics, 6 supplements - and I've reached a point where I can't face downing that many anymore.
I've kept the 400mg (2X daily) doxy - but wanted to know - how do you know when to stop? What are the risks of stopping?
Posts: 11 | From mass | Registered: Dec 2008
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jamescase20
Unregistered
posted
when you have done live blood microscopy over and over many times and you cant find any pathogens that resemble lyme or other co-infections. Thats my attitude about your question. BTW, the lyme has 100s of morphs shapes, and MUTENT shapes to evade abx. These mutents are unknown as to what they might look like as the term says there mutents..meaning crazy morphs of the bug that may not occur in others.
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posted
...but then you should do tissue biopsies as well - right? and since there's no knowing where the pathogens are hiding out - it's going to be fairly unreliable imo. Isn't there some 'rule of thumb' - like symptom-free for X-months?
Posts: 11 | From mass | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I know this can be a very rocky road. But, please, do not give up now. You might consider changing technique but you have to stay after the spirochete.
Biopsies are not of that much use with lyme.
Being symptom free for a certain number of months is a good rule of thumb when treatment has run its course.
You need to treat at least 30 weeks for lyme, according to this author:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
=======================
However, there are other ways to treat. Just be absolutely certain that you follow a protocol for which the researchers have really done their homework regarding the spirochete.
Here are some other avenues to consider. Note, though, that many NDs often suggest the use of abx along with supplements to get the job done.
You might be at a point where supplements alone (very specific ones) might be enough - or you might find a way to better tolerate your abx regimen.
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
Alternative Treatments for Lyme Disease and Co-Infections
===== =====
You might want to reassess your liver and adrenal support. By an ILADS member LLMD, this book holds great information about treatments options and support measures (liver; adrenal; etc.):
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
======================
You also might need to be assessed for other coinfections from ticks, as well as other chronic stealth infections to be sure all the bases are covered:
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Burrascano says to be symptom-free at least 2 months before stopping antibiotics.
The risk of stopping too soon is that the lyme disease will again overwhelm your immune system and you will have to start treatment all over again.
So, don't waste the 3 months you have spent. Stay the course or change courses, but don't stop treating yet. Unless, of course, you have been symptom-free for 2 months.
Are you self-treating? The doc will tell you when to stop if you have a lyme doc.
If you want to tell us what antibiotics you are on, then maybe we could give you tips for keeping the nausea and diarrhea away.
Like, for doxy, take it with plenty of food or the nausea can get really bad. Take it in the middle of a meal, for example.
Nausea and diarrhea are common doxy side effects.
Maybe your doc will switch you to something else. But with lyme, taking a large number of pills per day is just a necessary reality.
The entire time you are in treatment, you have to live by the clock. Every two hours it seems it is time to take something, or not eat, or now you must eat, etc.
When my husband saw how many pills I had to take, he said, "Pretty soon, you won't need food."
It can seem discouraging, but it is so well worth it to get rid of this horrible disease and get your life back.
I finished treatment about 4 years ago and am symptom-free, enjoying my life. That can be you too if you just hang in there.
It is a marathon, not a sprint as they say when it comes to lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Doxy was the worst for giving me horrid GI issues. There are other abx protocals that may be easier on your system.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Thank you for the posts - esp. the articles from Keebler which I am slowly working through. I was just very discouraged as others have mentioned. I have been on 400 mg Doxy, 1000 mg clarithomyocin, 400 mg plaquenil, 200 mg probencid, 500 mg Omnicef (hydroxychloroquinine) and flucazanole (one every other day). I emailed my LLMD and the recommendation was to go back to a point I could tolerate (which for me is the doxy) and slowly build back until I can isolate the 'offender'. I strongly suspect it's the Omnicef/probenecid combo. So - as of today I'm back to the level of the doxy, clarithomyocin, plaquenil and flucanazole .....the last addition is the part I'm dreading because so far I'm feeling fine.
Posts: 11 | From mass | Registered: Dec 2008
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posted
I haven't - would this replace the probencid only? To date - I have added back everything BUT the probenecid - and am doing fine.
Posts: 11 | From mass | Registered: Dec 2008
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